Stern Sydney, McKenzie Patrick F, Bernthal Nicholas, O'Neill Shannon, Palmerini Emanuela, Randall R Lor, Tap William, Scharschmidt Thomas, Rothschild Sara
TGCT Support/Life Raft Group, Wayne, NJ, USA.
Department of Organismic and Evolutionary Biology, Harvard University, Cambridge, MA, USA.
Future Oncol. 2025 May;21(12):1501-1510. doi: 10.1080/14796694.2025.2488635. Epub 2025 Apr 8.
Tenosynovial Giant Cell Tumor (TGCT) is a rare, locally aggressive neoplasm that adversely impact patients' physical function and quality of life (QoL). This cross-sectional analysis leverages real-world data from the TGCT Support Patient Registry to elucidate the patient experience with TGCT and the disease burden across healthcare systems.
A total of 497 patients from 32 countries, 71.4% ( = 355) with diffuse-TGCT (D-TGCT), 18.9% ( = 94) with localized TGCT (L-TGCT), and 9.7% ( = 28) with unspecified TGCT were included in this cross-sectional analysis of the TGCT Support Registry.
A majority of patients (61.2%, = 304) were diagnosed by orthopedic/sports medicine surgeons, half ( = 248) were misdiagnosed prior to their TGCT diagnosis, and 32% ( = 278) of patients were diagnosed > 24 months following symptom onset. 79.1% ( = 393) of all patients had ≥ 1 resection and 63% of those patients reported ≥ 1 recurrence. Of those patients that had recurrence following resection, 59% had ≥ 2 recurrences. 23% of patients ( = 115) changed occupations or prematurely retired due to TGCT and the proportion of patients increased with > 2 surgeries.
Greater awareness of TGCT among HCPs is needed to facilitate diagnosis and referral to multidisciplinary teams is warranted to reduce recurrence rates, number of surgical interventions, and improve QoL.
腱鞘巨细胞瘤（TGCT）是一种罕见的、具有局部侵袭性的肿瘤，会对患者的身体功能和生活质量（QoL）产生不利影响。本横断面分析利用来自TGCT支持患者登记处的真实世界数据，以阐明患者的TGCT经历以及整个医疗系统中的疾病负担。
本TGCT支持登记处的横断面分析纳入了来自32个国家的497名患者，其中71.4%（n = 355）为弥漫性TGCT（D-TGCT），18.9%（n = 94）为局限性TGCT（L-TGCT），9.7%（n = 28）为未明确类型的TGCT。
大多数患者（61.2%，n = 304）由骨科/运动医学外科医生诊断，一半患者（n = 248）在TGCT诊断之前被误诊，32%（n = 278）的患者在症状出现后24个月以上才被诊断。所有患者中有79.1%（n = 393）进行了≥1次切除，其中63%的患者报告有≥1次复发。在切除后复发的患者中，59%有≥2次复发。23%的患者（n = 115）因TGCT改变职业或提前退休，且随着手术次数>2次，患者比例增加。
医疗保健人员（HCPs）需要提高对TGCT的认识，以便于诊断，并且有必要转诊至多学科团队，以降低复发率、减少手术干预次数并改善生活质量。
